These resources can help families navigate various aspects of living with a rare disease. all the symptoms listed. Did you see a pediatric cardiologist? I also lost my dad to suicide 1 year ago so completely understand what you are going through. It seems that Turner syndrome is a "random" event, but based on our first pregnancy, are we at a higher risk of having a child with a genetic abnormality? The genetic abnormality in Turner’s Syndrome has no cure. Diabetes, high blood pressure, Addison disease, Cpap, and high chloresterol. She’s really sweet, smart and funny. Like I said, every girl and woman with Turner Syndrome is different. They exhibit a resiliency that is rarely seen. Reduced life expectancy is associated with these complications. It was really beautiful and exactly what we had told her. She was a straight A student and a honor student. Occasionally, your doctor also may request a cheek scraping (buccal smear) or skin sample. Females have two X chromosomes (XX) while males have one X and one Y chromosome (XY). I have no physical abornamalies from having turners syndrome. She’s working on a Master’s degree now, and there’s a 40 year old man teasing and harrassing her because she raises her hand to answer questions. Out of my 8 grandchildren she is the toughest smartest enjoyable granddaughter! My mom burst out laughing along with the doctor. Another great resource I’ve found is Claudette Beit-Aaron’s ‘Standing Tall With Turner Syndrome”. She received the Presidential sholarship at the college she went to. In Turner’s Syndrome, there is a defect in one of the X chromosome of the female; either it is absent or has defects. She seems to have friends at school, but not very many outside of school (in other words, not many invites to do things). Life expectancy reduces by around thirteen years. After my third stroke, I became a nursing home resident. If you have an OB/GYN, talk to him or her. Your email address will not be published. I have been married to a wonderful man for twelve years. I feel she had no social life. This means she may have one X-chromosome, two complete X-chromosomes, or one norm… Read more about treating Turner syndrome . I have had a good life, had fun, traveled, participated in light sports, married a very kind, understanding man, held an average paying job, and plan on having another good 20 years of life! We tried several cycles of IVF to no avail and whilst all the parameters looked ok eg womb thickness, E & P hormones levels it wasn’t working. I would feel your pain!!! She has flat feet and one leg is shorter than the other, which affects the way she walks. She is smart funny has a sharp wit and everybody that meets her can’t believe she’s four cause she looks like two. The only sign she has is mild clitoromegaly. Thank you and Merry Christmas!! Learn about Turner syndrome, an abnormality in the X chromosome of females that leaves them infertile. TS persons are not so different, all of us have strengths and weaknesses….with your daughter having TS, you’ll just know more about what those may be for her. When we started this the specialist told us that only 6 births worldwide to TS women had occurred !!. Your granddaughter and my sweet girl sound so much alike when she was that age. I’ll pray for your family! I Truely Believe “There is a Reason for Everything” Indeed they advised that using donor egg treatment should work. She is 13 weeks and has not had any signs on ultrasounds, however the cvs test came back with the list chromosome. She had to have a C-section and our children were bottle fed because she didn’t produce the hormone oxytocin that triggers womb contractions and milk production but we didn’t find it problem. She has some learning difficulties specially in math. She is kind, gentle, witty, smart (and has no problems in math), beautiful, and strives to be her own person. I am glad I am reading this site, it is helpful and supportive for women with TS. I thought our life expectancy was shorter to, so i’m glad I found this site and learned a little bit more about TS. Mary B. I have a Granddaughter that was diagnosed with Turner Syndrome Mosaic. Can you give me general information about mosaic Turner syndrome and about the prognosis of this condition? Everyone loves her and she lives a completely normal life. Obstructive lesions in the left side of the heart are commonly seen which significantly reduce the blood flow in the heart. Although not being able to have children isn’t as hard for me to cope with, if your family and significant other REALLY love you, they wouldn’t treat you that way, and if a guy really loves you, he won’t just leave you like that. I retired after my second stroke. I want to encourage you that your granddaughter is full of all the promise that life had to hold. 6. so her therapist just got her a gate trainer to use to see if that could help her out… but I was just woundering y she doesn’t wanna go maybe she isent ready or does it come from ts… any help from you would be great thanks . There have been blessings among those struggles. I only wish I could have sent her more times than I did. Individuals with Turner’s Syndrome who do not receive estrogen therapy are likely to develop osteoporosis. Do not be afraid, learn all you can learn about it so that you’ll know what to expect more, and just be prepared to fall in love when you see her…she will be perfectly imperfect, as we all are….she will bless many lives if you can focus on her strengths and not her weaknesses…she will learn to do the same. My sistercwas diagnosed with Turner’s around 5 years old. I was on estrogen replacement until a couple of years ago. some sound catastrophic and others sound relatively minor. When this is not given, females only reach an average height of less than five feet. I have aortic valve stenosis as well as mitral valve stenosis, but have been under cardiologist care most of my adult life. Because I would like to take this opportunity to say I think you are all brave to deal with something as traumatic as I have been reading about over the last few weeks and long may your fortitude reign. I didn’t understand at first that there are differences in female sexual drive and male sexual drive, for guys with Klinefelters, hormone replacement might not fully help. By rodney419153360 | 1 post, last post over a year ago. No children, menopause at 24 years old. She had been married for 13 years to a great guy. My daughter is having problems learning in class. Have you found the Turner Syndrome Society? By hayyim348151034 | 1 post, last post over a year ago. I am not 45xo. My daughter has Turner’s Syndrome and she will be 42 years old this week. She plays tennis (and is on the tennis team in high school). I couldn’t imagine life with out her to learn on, have fun with, and talk too. God has a way of doing things and you will know when it’s time for you to know. Other than medication regimes, I feel like the average woman. She is and has always been the joy of our lives. This type accounts for up to 4% of all cases of Turner’s Syndrome. Comment from: D, mcr, 45-54 Female (Patient) Published: March 22. Forgot to mention that I’m happily married and have a child so who ever says that women with TS can’t have baby’s they are wrongs!!!!! my world felt like it was turning upside down until i saw this post! I’m 19 years old living with turners syndrome. I would like to know everything you care to tell me about growth hormone shots. You are blessed with this child…she will be wonderful. Genetic counseling should be done with parents with an offspring with Turner’s Syndrome, although recurrences with following pregnancies are usually low. THIS SITE HELPED ME A LOT I GOT MUCH INFORMATION. She was talking by walking by a year,, and is very smart! I can’t say I would tell you to do what I did but as far as I’m can see I haven’t had any problems from not going to the doctor with this. The main cause for Turner’s syndrome is still being studied, but some theories support its development. my 10 year old just got diagnosed…heart tests came out fine, small cyst in 1 kidney and ovaries of course underdeveloped…my question is the heart issue…we were told by 3 different doctors that once you check the heart and valves and its normal there would be no reason to check it again…yet i read here that some check every couple of years…anybody really know the answer,,,btw she has mosaic TS..starting hgh this week…thanks. My story is very similar to yours. Diabetes – Diabetes is a potential result of obesity in Turner’s syndrome. It took about 6 moths to stabilize her thyroid levels and then tried again using a frozen embryo … success !! This causes me to feel deeper grief because although I accept I was talking about the end of someone’s life, it would have allowed others to empathize and possibly provided me me emotional and moral support. You understand do you some people are mean. Our daughters are amazing, intelligent girls, in their 20’s now and we love them more than anything. If you find someone to love and who loves you TS won’t stand in the way of a good sex and a life together. However, girls and women with Turner syndrome are … I was not diagnosed until age 22 or 23. I had a stroke in my 30’s or rather about 25 mini strokes when I was 29 weeks pregnant. People sense something “different” about her, but can’t put their finger on it, so they’re just mean. 7. A fetus having the condition in the uterus often ends up as still born or spontaneously aborted during the early stage of conception because of the congenital anomalies. However, when complications are not detected, patients often die at an early age due to kidney and heart problems. Next time we repeated the process with an embryo transfer on a Tuesday and by Saturday morning Kerry was ill with morning sickness and subsequently gave birth to our son Stewart. I have Turner syndrome and I am a recently retired 65 year old. Ive plenty of friends . Humans have a total of 46 chromosomes including two sex chromosomes. During conception, the sex chromosomes are not transferred properly leading to the condition. Since the condition is associated with chromosomal aberrations, there is no current cure to completely eradicate the condition. Hi, I have TS and feel really lucky. You are expecting a baby girl with Turner Syndrome. She struggled with social skills. Her best subjects were math and sciences. She hasn’t had a lot of health issues but of course she is not one to discuss problems with health. Hi everyone But worries all the time. Once these were fixed she got pregnant immediately after the next two frozen embryo transfers. Turner’s Syndrome or gonadal dysgenesis is a condition that affects females in which one of the sex chromosomes (X chromosome) is completely missing or has abnormalities. windows, iOS and even Android systems. The life expectancy given is inaccurate on 2 accounts to say turner girls live into there 50s is wrong it is significantly higher and in most cases normal life expectancy, and if this is the case reduction would be far more than 13 years!! I now know that it was the hormones that were working on me with this one guy I started to like in high school, so at least the hormone replacement can help. Ive lead a normal life often get teased over my height 4ft 9 inch . Turner syndrome is related to the X chromosome, which is one of the two sex chromosomes.People typically have two sex chromosomes in each cell: females have two X chromosomes, while males have one X chromosome and one Y chromosome.Turner syndrome results when one normal X chromosome is present in a female's cells and the other sex chromosome is missing or structurally altered. Diagnosed at birth.. for your site to say I only have 10 more years left is stupid and disgraceful.. Read and get your facts straight…girls younger than me read this. great nieces and nephews, god daughters and god sons bring me great joy as well as my good friends. However, if the condition is not detected in good time, one can die earlier as a result of health complications such as heart and kidney problems. Thank you for sharing this. I have turners also. Yes I am short, I do have hearing loss and lot’s of Nevi. There is no cure for Turner syndrome, but many of the associated symptoms can be treated. She was having loss of hair, heart palpitations and some other symptoms and they said her level was so low it was dangerous. Submit a new question, I underwent an IVF cycle and got pregnant but miscarried at 9 weeks. The HPO The chromosome analysis determines whether or not there is a missing X chromosome or abnormality of one of the X chromosomes. WHO HAD TS DONT MAKE YOURSELF SAD EVERYTHING WILL BE OK. EVERYTHING IS POSSIBLE IN LIFE. So I was taken back in forth to the doctor every two weeks for a very long time. Genetics Education Materials for School Success (GEMSS), Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Human Genome Research Institute's. However, I confess to being male so the evolving question is: “Why am I reading about Turner Syndrome?” Quite simply because I was attempting to start a relationship with a woman who is nigh on fifty years old and has TS. (And thus far – no cardiac surgeries!) Females with Turner’s Syndrome usually reach 50 years of age. Living with a genetic or rare disease can impact the daily lives of patients and families. I was on hormones for 20 years or more. I am 51 and was diagnosed when I was 13, I also thought we had a shorter life span to. I absolutely love this site. We were friends, and I started wanted more, and for a while I think he did too, but I think he was afraid of our families and people might say. 2005;139(2):57-66. .it’s all good, I have both. Your daughter may be imaginative and creative (I try to write poetry and fiction). My mom sat there and chuckled along with her. I am very interested in emailing Jaden’s Mom. Many factors can affect a person's prognosis, including: the cause of Turner syndrome, symptoms of Turner syndrome, and other medical conditions that occur. I am sat in a local library in Berkshire having read the majority of the above letters; I feel very upset reading about all your experiences. 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